Every day I see people with life-limiting illnesses living longer and better when supported by a team. This team approach of family and friends with the support of a range of health professionals helps address physical, emotional, psychosocial, and spiritual symptoms. The team provides meaning and support for the person and their community.
This team approach can be seen in the provision of palliative care at a system level as well.
It is the mixture of generalist and specialist palliative care, of private, government, and non-government services, and the connection and communication between all the services that help a person and family facing a life-limiting illness both live better and die better.
The palliative care state-wide clinical network is a South Australian team of consumers and health professionals who together have developed a vision with a clear focus. ‘We are committed to South Australian consumers, carers, and the community in the comprehensive delivery of best practice holistic palliative care. We will achieve this through a multi-disciplinary cross sectors partnership of consumers and health professionals’. The emphasis is on collaboration across sectors in delivering palliative care to focus on the person, carers, and community requiring support.
Last year, COVID-19 provided the opportunity to highlight system collaboration. It highlighted the importance of a team approach in delivering palliative care. The clinical network ran a survey from September to December 2020 hosted through YourSay to explore the experience of receiving and delivering palliative care: ‘COVID-19 Palliative Care Consumer, Carer and Clinician Experience Survey’.
South Australia had relatively few deaths directly attributable to COVID-19. However, community isolation and heightened societal anxiety were found to have a large impact. Visiting restrictions compounded the distress of family separation. These impacts were felt in all sites of care; home, residential care, and hospital, as service delivery had to adapt to changes induced by COVID-19. For interstate relatives, navigating travel and quarantine added to an already difficult time. For clinicians providing palliative care, changing protocols and visitation policies added complexity to supporting persons and families with a life-limiting illness.
“The most difficult time was at end of life. We as a family could not be together as the visitors’ restrictions was 2 persons at a time.”
“Some resident’s families had to say goodbye from outside their window.”
At times, access to the services providing palliative care seemed difficult. Although telehealth capabilities were introduced and expanded and clinician connection to specialist palliative care was facilitated with a central phone number, both those receiving care and those delivering it spoke of delays and difficulties in accessing services. The care changed.
“Volunteers were unable to attend the hospice for about 4-5 months this year. The hospice was a very sad place without the volunteers present.”
To find out more of what we learned I invite you to review these survey results in greater detail, available at https://ceih.sa.gov.au/palliative-care
The state-wide clinical network continues to work in collaboration.
Our consumer representatives have driven the development of a community model of palliative care; compassionate communities. This culminated in a workshop forming connections between key stakeholders. Currently, a local council is exploring partnerships to develop this model in their local community.
The grief and bereavement advisory group are reviewing the needs of friends and families supporting those with a life-limiting illness. There is recognition that support does not end with death and that grief is a normal reflection of a relationship of care.
Working with System Design and Planning, Department of Health and Wellbeing, a strategic plan to provide over-arching principles for palliative care in South Australia is under development. This will assist in identifying needs for South Australians receiving a palliative approach and inform the collaborations, service planning, and models of care to achieve this.
I invite you to read and offer feedback on the work of the state-wide clinical network as we work as a broad team for those with a life-limiting illness and those caring for them.
Dr David Holden, Palliative Care Consultant Clinical Lead, South Australia Palliative Care Clinical Network